NHMike wrote:I've heard that the benefit of a high-fiber diet is that it makes the stool softer at the expense of more volume. I was able to go Saturday morning with some effort and quite a bit came out. It might have been that there wasn't much there before or that it was further on up. I tried going today and it was harder and I took a packet of Miralax which wasn't that productive [yet anyways]. I may be better off just waiting for a while until I feel pressure.

I understand what you are saying, butt as a patient with a few surgeries down there, they always want me on a LOW fiber diet for awhile, so food can pass easier. High fiber can bulk up. Unless you know something I don't know. If you have data, please let me know.

prs wrote:Mike, if you are still concerned the tumor is blocking you up....my colonoscopy prep includes 24 hours of a clear liquid diet followed by drinking a gallon of MiraLax solution at a rate of one 8 oz glass every ten minutes. Essentially this turns the entire contents of your colon to a watery liquid, and you become a human fire hose, it's like you are peeing out of your ass. I don't think you need to drink the whole gallon, I find it starts working after about 9 glasses or 90 minutes.

I did the full prep for my second colonoscopy and that was rough. I may try a bottle of Mag Citrate tomorrow. I would consider an enema as well if I could determine that it's safe to do so. Mag Citrate can take a few hours to about half a day with me.

I haven't looked at any studies on this (not sure of where to find them) but I went back and forth with the nurse at the Radiology center last week. She initially said low-residue but she also thought that maybe high-fiber might be beneficial as it comes out softer. I should probably go with the conventional wisdom though.

I ran a mile (haven't done that in a month) and did some weightlifting and I slept better last night than in some time. My calves were sore this morning too (which is a good sign). I think that I need to get back to working out to overall feeling better.

I also spoke with a coworker that has cancer but it's being controlled with medication. I thought that the medication had cured him but it's actually only maintenance mode. The tumor has shrunk but it's still causing some issues (which are controlled with other medical technology) and it's unclear whether or not the tumor will continue to shrink. It was a good chat as we discussed some of the things that we were both going through and I got a few suggestions from him on going through the process.

NHMike wrote:I've seen the technological progress on the war on cancer and intellectually understand that surviving five or ten years could bring cures or vaccines to various kinds of cancer. I'd love it if there were targeted treatments for colorectal cancer but these seem to be developed for other kinds of cancer that are difficult to treat like Lung Cancer.

I'm planning on getting a genomic analysis of the tumor at Mass General Hospital. A pathologist recommend a Micro Satellite Instability test and they'd be able to do a full analysis to see if there are any targeted treatments that would be more effective than the standard regimen. I'm not particularly hopeful that there is and I don't know if my insurance would cover it anyways. Some of these targeted drugs are quite expensive compared to 5FU. I'm curious if anyone else here has had the genomic testing done. The tumor biopsy is at a local hospital and I have to figure out how to get it to Mass General.

Microsatellite status is very important to know because just some months ago immunotherapy has been approved for those MSI-High --microsatellite instable high. And there are many trials combining immunotherapy + other agent --that might be chemo or other immunotherapy-- for those MSS --microsattelite stable. (See the MSS immunotherapy-based trials in my signature)It is important to know status because there are trials combining standard of care plus immunotherapy, for example, even for those just diagnosed:Immuno trial only for UNTREATED MSS CRC (recently diagnosed): viewtopic.php?f=1&t=57245https://clinicaltrials.gov/ct2/show/study/NCT03050814

NHMike wrote:I've seen the technological progress on the war on cancer and intellectually understand that surviving five or ten years could bring cures or vaccines to various kinds of cancer. I'd love it if there were targeted treatments for colorectal cancer but these seem to be developed for other kinds of cancer that are difficult to treat like Lung Cancer.

I'm planning on getting a genomic analysis of the tumor at Mass General Hospital. A pathologist recommend a Micro Satellite Instability test and they'd be able to do a full analysis to see if there are any targeted treatments that would be more effective than the standard regimen. I'm not particularly hopeful that there is and I don't know if my insurance would cover it anyways. Some of these targeted drugs are quite expensive compared to 5FU. I'm curious if anyone else here has had the genomic testing done. The tumor biopsy is at a local hospital and I have to figure out how to get it to Mass General.

Microsatellite status is very important to know because just some months ago immunotherapy has been approved for those MSI-High --microsatellite instable high. And there are many trials combining immunotherapy + other agent --that might be chemo or other immunotherapy-- for those MSS --microsattelite stable. (See the MSS immunotherapy-based trials in my signature)It is important to know status because there are trials combining standard of care plus immunotherapy, for example, even for those just diagnosed:Immuno trial only for UNTREATED MSS CRC (recently diagnosed): viewtopic.php?f=1&t=57245https://clinicaltrials.gov/ct2/show/study/NCT03050814

Thanks for the information. I was supposed to get this done on Friday but I was too busy and tired (I had Oncologist and Radiology Appointments and they went a lot longer than I expected). I'll talk to my son about getting the biopsy sample to his lab today. I guess that they have to request the remaining part of the block from where I had the colonoscopy done and they have some procedure for that. Son said it would take about 1.5 to 2 weeks to do the sequence and reading though. So my treatment will be underway by then.

What I read about MSI before for ColoRectal cancer is that being MSI High may mean that traditional treatments (5 FU) may not work that well. I think that MSI-high would be related to Lynch syndrome which would make cancer more likely when young (which I'm not). I think that it may be inherited as well and neither of my parents have/had cancer. So I'll get moving on the test - maybe it will be helpful, maybe not. My son was fairly familiar with the MSI as he's done some programming in looking for it in the past.

I went for the Chemoteach course at the hospital to learn about the Xeloda side-effects and how to get in touch if there are any problems (24-hours on-call service). I also asked if the person teaching had ever had an off-hours emergency and she said no. I asked if anyone had extreme side-effects and she said no (we were talking about the Xeloda).

One minor headache about the pills. They come in 500s and 150s which leaves dosage holes as you can't get to every multiple of 50 below a certain point without sometimes using a lot of the small ones. My dosage is 1,700 mg so that's one of the big ones and 8 of the small ones. Twice a day. So I'm going to be popping a lot of pills. She's going to check on the delivery scheduling as I don't want to be late in starting with the radiation. I think that these pills are at least $1K retail in the US - maybe up to $4K without a coupon or other discount. Should be interesting to see how much they are with insurance.

I had 1/3rd bottle of Magnesium Citrate and also did an enema. They were mostly clear so there isn't anything to expel - the mass just makes it feel like it. So some of this is just in my mind which gives me some relief but I would like to go within a day or two when there should be something there.

My concern is that the mass keeps getting bigger in the 9 days before I start radiation and that I can't poop in that time.

I know how you feel, my mom felt the same way but just know this. Before chemo/radiation you want to do a high fiber diet (to get BM out) So for my mom, we did oatmeal, any berries, raisin bran, popcorn, rye bread, etc etc. Also, MIRALAX really helped my mom when she was backed up and also Milk of Magnesium... Ask your dr. about it.

When you start chemo/radiation, you will need to watch your diet cause instead of being constipated you will do opposite after week 2-3. Diarrea develops and they do want you to be dehydrated so you have do an opposite diet like BRAT Diet (banana, Rice, apples, toast and black teas) They want you to be in the middle as far as texture (not constipated, not diarrhea) My mom is on week 3 and she has to be near a toilet as she says her pee stream is more regular and she has the urgency to go poo but sometime she goes, sometimes she doesn't. And she is complaining of being in a little pain from Radiation (in her rectum) I had a styrofoam rectal cushion made for her by kinesiology. The rectal doughnut thing wasn't comfortable enough. My mom can't go anywhere due to her always having to be at a toilet but she seems to be doing better than I thought. It's going by very quickly and what has really helped with her NOT getting nausea is taking her XELODA exactly 25 min after breakfast/dinner with a tall glass of water, that seems to be the key. She hasn't had to take the fatigue meds yet. Best of luck!!

My concern is that the mass keeps getting bigger in the 9 days before I start radiation and that I can't poop in that time.

I know how you feel, my mom felt the same way but just know this. Before chemo/radiation you want to do a high fiber diet (to get BM out) So for my mom, we did oatmeal, any berries, raisin bran, popcorn, rye bread, etc etc. Also, MIRALAX really helped my mom when she was backed up and also Milk of Magnesium... Ask your dr. about it.

When you start chemo/radiation, you will need to watch your diet cause instead of being constipated you will do opposite after week 2-3. Diarrea develops and they do want you to be dehydrated so you have do an opposite diet like BRAT Diet (banana, Rice, apples, toast and black teas) They want you to be in the middle as far as texture (not constipated, not diarrhea) My mom is on week 3 and she has to be near a toilet as she says her pee stream is more regular and she has the urgency to go poo but sometime she goes, sometimes she doesn't. And she is complaining of being in a little pain from Radiation (in her rectum) I had a styrofoam rectal cushion made for her by kinesiology. The rectal doughnut thing wasn't comfortable enough. My mom can't go anywhere due to her always having to be at a toilet but she seems to be doing better than I thought. It's going by very quickly and what has really helped with her NOT getting nausea is taking her XELODA exactly 25 min after breakfast/dinner with a tall glass of water, that seems to be the key. She hasn't had to take the fatigue meds yet. Best of luck!!

Thanks for your recommendations. I was following you in the other thread I think.

I have five days to go before the radiation starts. We do a dry run on Friday (day after tomorrow). The Xeloda should theoretically arrive tomorrow but the oncology nurse is checking this for me. I was going to ask if I could start taking the Xeloda early but this would cause a mismatch with the radiation.

I took a Miralax last night and it was only slightly productive. My stomach feels empty, no bloating, no pressure except for the mass. I keep wondering where the food has gone as it's been around the fourth day without a significant BM. I also checked the stats on the MRI and I think that I'm Stage 3B. I worry that I turn 3C while waiting for treatment.

I mentioned that to the training nurse yesterday - one of the big problems that I see with the medical profession, as far as I've dealt with it, is that there isn't a much bigger sense of urgency to get treatment as cancer doesn't necessarily wait around for you to learn, get appointments, take tests, etc. It may be that they don't want to be pushy or that their training isn't to push but I think that it would be better overall if they did. The natural thing for me all of my life for illness was to wait and let the body deal with it and that doesn't work with cancer.

I didn't sleep well last night - I did walk a few miles as I couldn't get in a run but the worries are getting to me again. I feel like a fragile mess right now. I need to get some food and go for a run.

I'm sorry to hear but it's totally normal to feel the way you are. Did your pathology report say low grade adenocarcinoma ? How many lymphs involved?Ya the waiting part is so hard. My mom had to wait until July to get chemo radiation done after he diagnosis in early May! I thought for sure it was going to spread... but her last MRI scan was 06/05, showed no spread to near organs. Her dr. prescribed her ATIVAN for sleep and anxiety. She takes 1/2 at night and it works for her. She is also very nervous about this whole thing. She is doing fairly well though for her age. Best of luck!! Take chemo meds with gloves.. so I read.. She does. And take it 25 min after breakfast and dinner.. exactly.. that is the key to not getting nauesa. It may be 20 min for you ,but time it and make sure it's consistant or tweak it

Maia wrote:Microsatellite status is very important to know because just some months ago immunotherapy has been approved for those MSI-High --microsatellite instable high. And there are many trials combining immunotherapy + other agent --that might be chemo or other immunotherapy-- for those MSS --microsattelite stable. (See the MSS immunotherapy-based trials in my signature)It is important to know status because there are trials combining standard of care plus immunotherapy, for example, even for those just diagnosed:Immuno trial only for UNTREATED MSS CRC (recently diagnosed): viewtopic.php?f=1&t=57245https://clinicaltrials.gov/ct2/show/study/NCT03050814

The pathologist got back to me with the consent form and explained that MSI High will qualify me for Merck's new Keytruda treatment. It's only found in about 15% of colon adenocarcinomas though. They run it through an algorithm and if it's likely, then they'd need a blood sample to do a PCR-based Microsatellite Assay to confirm. BTW, I have no idea as to what that last thing is. I have to print out the consent form and send it in and provide some other personal information and the location of the biopsy and I'm going to take care of that tonight. My chemorad will start on Monday so the genetics results would come afterwards. I don't think that colorectal cancers are routinely tested genetically because there haven't been targeted treatments but maybe there are some in the pipeline.

ocstacy wrote:I'm sorry to hear but it's totally normal to feel the way you are. Did your pathology report say low grade adenocarcinoma ? How many lymphs involved?Ya the waiting part is so hard. My mom had to wait until July to get chemo radiation done after he diagnosis in early May! I thought for sure it was going to spread... but her last MRI scan was 06/05, showed no spread to near organs. Her dr. prescribed her ATIVAN for sleep and anxiety. She takes 1/2 at night and it works for her. She is also very nervous about this whole thing. She is doing fairly well though for her age. Best of luck!! Take chemo meds with gloves.. so I read.. She does. And take it 25 min after breakfast and dinner.. exactly.. that is the key to not getting nauesa. It may be 20 min for you ,but time it and make sure it's consistant or tweak it

There are two regional lymph nodes involved. I went by the letters and numbers and it seems like a Stage 3B to me.

I was able to do a BM this morning. I think that it was everything for the last four days. I then did some running and after the running, a lot of water came out (likely from the Miralax last night). So my mental state has improved as I don't have to worry about potential blockages for a few days.

Interesting about your gloves comments. The nurse told me that nobody else should handle the pills. I asked about using gloves and she said that they weren't necessary. But she said that they should not be split, cut or pressed. I think that the pills need to make it into your stomach whole and then release the contents. So I'll examine the pills carefully.

I have never taken anything to help me sleep before and I'd like to avoid doing so in the future. I'm going to run a bit more today and do some weights and hopefully that will tire me out enough so that I can sleep well.

For those getting Xeloda, I found out that they generally mail these to you. None of the staff that I talked to ever heard of someone picking these up at the local pharmacy. The pills are apparently quite expensive ($1,000 - $4,000) and they do them mail order to either save money or prevent fraud (not sure how that works). At any rate, I will need to stay home to wait for them as the nurse said that I wouldn't want them waiting outside on a hot day. I called the nurse to see if I could get a tracking number but she didn't get back to me.

I thought that I'd read up on Microsatellite Instability and what it means and ran into a paper that categorizes CRCs into types. The purpose of the paper is to talk about MSI-High and the implications of it. MSI-High affects about 15% of patients. Of these, about 3% have what's called Lynch Syndrome. He was a Morman that traveled across the country west and he had a mutation that results in CRC cancer in a lot of his descendants. The remaining are classified in a different way but it appears that there are targeted drugs and treatments for the category of MSI that your tumor is (though you see this in the Clinical Trials thread here).

Some of the stuff in this paper goes way over my head but getting the test might be useful for the possibility of finding out if there's a targeted treatment available. I've seen some of the folks here an in other places talking about this stuff and it was fuzzy or foreign to me - going through the paper and then some of the clinical trials descriptions made things somewhat more clear to me.

The pills are apparently quite expensive ($1,000 - $4,000) and they do them mail order to either save money or prevent fraud (not sure how that works).

Yes, the Xeloda pills are very expensive. I believe the pharmacy mentioned like $7800 for a 28 day supply or something like that. My mom is very lucky as her insurance covers for all of it as well as the surgery and chemo/radiation therapy.

They come from a different type of pharmacy other than the regular. Best of luck.

NHMike wrote:... I've had consults with the local oncologist, local radiologist, Dana Farber oncologist, Dana Farber radiologist and B&W Surgeon. So I'm more or less prepared to start... I have had the tumor prolapse from time to time and there's often a lot of blood when this happens. This morning, though, it prolapsed and wouldn't go back in and was bleeding a lot...I am also eager to get the Radiology prep work done. They put two small tattoos on you to set alignment points for the radiation machine..

It looks like you will be starting your chemo/radiation sessions soon. I was wondering if your local radiation oncologist has commented on possible difficulties with administering radiation to a tumor that may prolapse during the radiation session. Normally, during an IMRT / IGRT radiation session they need for the tumor to remain immobile so that the radiation can be aimed properly. Does their equipment have the capability to follow a prolapsing tumor if it starts moving aound during the radiation session?